Previous polls and surveys point further out how confusing and frustrating

January 11, 2008

I find it interesting to get a picture of our group and various

issues we've faced. The polls or surveys show as we all know that

there are no right answers and no absolutes or consistencies.

Sleep Apnea

Leanne ran a poll asking if we'd been tested for sleep apnea. 52%

said yes and 48% no. Right down the middle. Does that mean the other

48% have no problems or just they haven't been tested. Of those

tested, how many are on CPAPS or just taking oxygen for sleep.

Advil

There was a poll as to what percent had used Advil for coughing or

shortness of breath. The results were odd as all four who said they

had tried it said it had been successful in helping. No one said they

had tried it unsuccessfully. The vast majority (15) hadn't tried it

for those symptoms.

Coke/Pepsi

Ok, we knew going in this wouldn't be close....lol

Prednisone

37% said they were on it and had seen a benefit. 11% on it with no

benefit. 28% have come off it or were coming off at the time. 20%

chose to not try it. Very mixed as we would have expected. I think it

shows why people need to learn and make their own decisions as it

clearly shows whats right for one isn't for others. Still with all

the negatives (and I'm among the haven't and won't group), 37% are on

it and feel its benefitting them.

Diagnosis

52% here feel totally confident in their diagnosis as to specifically

which form of ILD they have. 31% have some confidence but not so

sure. 17% are completely in the land of confusion and frustration.

Tell me any other disease in which only half would feel confident of

their diagnosis. And this doesn't even account for what the confident

52% had to go through to get there. Most diseases, you have a simple

test or two and have your answer. Here's the disease, here's the

treatment. Come back in a year. A good percentage of those of us

totally confident had to go through a very invasive surgery.

When its easier to get a concensus on Coke versus Pepsi than anything

related to our disease, that tells you something. It just shows that

for everything we know about this disease there are hundreds of

things we don't know. All the more reason we need each other.

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